Coping with Kidney Failure: You are THE BOSS!

You Are THE BOSS! Yes, even you as a sick, tired, person in need of treatments—don’t let them kill you.

A Care Partner’s Perspective on Dialysis Anemia

I am the care partner for my wife, who has CKD/ESRD stage V. Her kidney was on a steady decline, after her other kidney died through renal stenosis. She had a liver transplant nearly 30 years ago and the medicines, coupled with her cardiovascular system, led to kidney failure and eventually, through a rugged road, dialysis. She is now a home Hemodialysis patient. We are big fans of this, and have proven more than once how valuable this is for both the treatment (it is much more gentle than incenter), and flexibility. Sometimes, things just happen. Sometimes these things happen because of profit over patients at a large national dialysis system.

If you are reading this, you may be new to the “club”, or a veteran. You may be a new care partner for a spouse, parent, or child. Either way, caring can be overwhelming. One of the key things the kidney does, besides filtering the toxins from the blood, is to regulate various hormones. A typical dialysis patient will need help with these hormones, in particular with hemoglobin.

My wife is no stranger to anemia and low hemoglobin. It is managed, and quite well, with the drug known as Epogen. The body’s needs change and getting the dosage appropriate for the patient is a challenge, as the results are not immediate—it often takes 2-6 weeks before you can see a real number to determine if it’s working, working well, or not enough. This, of course, is a simple adjustment at those “very useful waste of most of the time” clinic appointments. (I mean, do you really need to block off 4 hours to chat with the doctor while they read you the list of labs you have already read, and listen to canned speeches with the “monthly patient education” or my favorite (HHD only clinic, mind you) “and this quiz is on our emergency exits”- quite a useful way to use money to quiz the patient on the emergency exits for the 2-3 hours they are there each month.) But, I digress. My wife’s hemoglobin had been managed fairly well with the Epogen, after a year or so of getting the dosage just right.

An Involuntary Switch to Mircera

However, the national dialysis company insisted, twice, over the last 3 years, that she would no longer take Epogen, but Mircera instead. She tried it the first time, hemoglobin dropped, steadily. They tried for 3 months, and like the 50000000000 hepatitis vaccine shots she gets that also don’t work, she was listed as Mircera/no-effect. They put her back on Epogen and things were good (after they finally got the dosage right, again). A few months ago, they demanded (not insisted but demanded, so much so that if she refused she would be marked non-compliant) they would not write anymore Epogen, and it would be only Mircera. They eventually said this was a “corporate policy”, and either do it, or they will take dialysis away, for non-compliance.

Her hemoglobin had been steady, with Epogen, and holding around 10 or so. She knows, without labs, when the hemoglobin is low, and when it is around 6, she is lethargic, can’t think straight, her legs ache and twitch, and she has no energy mentally or physically. In the past ER experiences, if her hemoglobin was closer to 7, they were talking blood transfusions.

This went on for months, her hemoglobin dropped down to about 6 and she took me to her next appointment. I am not sure they “enjoy” my visits. In part, I am autistic, so my communication is not always “well received,” and one can only mask for so much before they cannot, just like one can only have dialysis for so long, before it no longer works. Seeing my wife being told, basically, to be a good girl and do what she was told, seeing her move backwards in feeling almost as she felt before she began dialysis, I was quite frustrated because this was their fault. There was a solution, and it works, this other did not. This had been proven more than once.

In the clinic appointment, I laid it out for the doctor. He is a little arrogant and insecure (I know how many years he has been doing this, before I even asked, because of this insecurity), and we broke down this situation. In the end, a pharmacy in Florida sends medication and the pharmacy doctor made the decision and would not send any Epogen.

Effective Advocacy

Now, think about this. Her doctor, the one who sees her, reads her labs to her (I guess dialysis patients cannot read?) said basically, “This is our company policy, and I cannot overrule the pharmacy doctor.” I said, “So, you are saying that the doctor who does not see your patient has more say in her care than you, who see her, talk with her, and provide her care? Should we move to Florida and go to clinic appointments there?!” His feelings got hurt, and he left. The nurse, who is an advocate, just sat back and watched. They sent in the social worker, she left nearly in tears and they sent in the “site supervisor” who started to tell me what I would and would not do.

In sheer frustration, I said, “Let me have a piece of paper so you can give to me some information.” In short, I politely told her I would be sending a letter to the State Medical Board, AMA, CMS, BBB, and use my actor’s profile with more than 5k followers, to share our experience of this branded, national provider. She gave me forms and then the doctor and nurse came back. I was like, and was that supposed to shut me up? Our next trip was to the ER, because any ER doctor would see hemoglobin that low, and need immediate intervention—and I pointed that out.

Apparently, my framing of the situation for the doctor helped because he called that doctor. They had a heated exchange and in English, he cussed him out. There is always a way to use arrogance of a person for your benefit.

Speak Up Against Medical Negligence

This is all to tell you, perhaps as a cautionary tale, that YOU ARE THE BOSS! Data do not lie nor can they be used against you in this type of situation. My wife’s hemoglobin was dangerously low, to the point nearly of hospitalization, because of their negligence. There, I said it, medical negligence. Further research revealed that they pay less and “benefit” (likely corporate kickbacks on the back-end) from Mircera over Epogen.

I have found in our 4 years of being a patient at this national provider that they love to use the fear of “mark you noncompliant”, if you do not do what they want. Yes, you should do the treatments as prescribed, communicate when it changes (we have to change schedules and she lets them know and the reason), and be a good patient (diet, exercise, and the like), but you are not a number. You are not a poor pathetic soul, a serf looking for scraps at the iron gate, and without you, they would have no business.

THIS IS YOUR LIFE

Yes, dialysis sucks. It takes a lot of time, you don’t see immediate results (except you are still breathing) and while you should trust your providers, you should verify, speak up, and BE AN ADVOCATE FOR YOURSELF. I promise you, they are concerned about the bottom line, units in chairs, and the business of keeping you alive, but you are still the boss, the star (and ironic icon of this provider), and it is your life—your treatment, your daily living. I am not a fan of needing to be as educated as a dialysis tech, nurse, or doctor, and you shouldn’t be either, but if they make a medicine change and you start to feel worse and worse, if they propose a change and you do not understand (if it ain’t broke why are they fixing it?), SPEAK UP! I was reminded that although I am not the star, just the faceless worker behind the scenes, it is us who often are the only ones who can make our patient’s voice heard. So, amplify their voice and demand the best for your patient.

I cannot say it enough, this is YOUR treatment and like any other treatment, you have the right to know. Unfortunately, we have to have some legal skills too, so before this event, I had read their supposed grievance policy and process, and pointed out the inconsistencies (care vs. what was in the lengthy legalese document) and that helped. When things are not right, there is recourse. Perhaps not as nuclear as I was planning to go, but every clinic has a boss. That boss has a boss and the boss’ boss, also has one—in this case, the Board of Directors.

Is your patient worth standing up for?